New Patient-Driven Arthritis Charter in Canada

To mark Arthritis
Awareness Month, the Canadian Arthritis Patient Alliance (CAPA) has released
the Arthritis Charter, created by people who live with arthritis for people who
live with arthritis. What is the Charter? Dawn Richards, Vice-Chair of CAPA,
graciously agreed to answer some of my questions

What is the Canadian Arthritis Patient Alliance
and what does it do?

CAPA, as we call
ourselves, is a not-for-profit, patient-driven organization that strives to represent
Canadians living with arthritis. It’s been around since 2001. We advocate for
all things arthritis, to educate and raise awareness, and for access to
treatments (drugs and otherwise), often through partnerships. For example, we
have recently submitted patient input to the Common Drug Review, which is part
of getting a drug approved for provincial formularies. We represent the patient
perspective about why it’s important to have new options to treat arthritis,
and that even though some of these treatments are very expensive, in the long
run, allowing people access to these medications is a good thing. Having a
person who is able to have a job, contribute to their family, take part in
social activities, etc., costs society and our healthcare system far less
overall than what the actual pharmaceutical treatment costs.

What is the Arthritis Charter?

The Charter is a bill of rights and responsibilities that
helps people with arthritis understand the kind of care they should expect to
receive from their healthcare providers, as well as remind them that they are active
partners in their care. I see this as reminding us patients of the important
role we play in our care.

How and why was the Charter developed?

A Canadian Arthritis Patient Bill of Rights was drafted in 2001, led by the Arthritis
Society, and with input from many arthritis stakeholders. Since 2001 so much
has changed! Biologics have changed the landscape of care, inflammatory
arthritis is being aggressively treated before joint damage, our population has
aged and the healthcare system is close to maxed out.As well, our society has decreased its
attention span - we’re bombarded with messages from different media. Maybe most
importantly, we’ve seen a ‘new’ kind of patient emerge - one who’s no longer so
patient. We’re much more educated about our illness, and eager to be part of
our care.

We saw all of these
things as an opportunity to update the Bill of Rights, now called the Charter, and
to remind people that they need to play an active role in managing their
disease. We’ve created long and short versions of the
Charter – one that gets
to the point for those of us with really short attention spans (!) and a longer
one with more detail.

It’s also an opportunity
to remind people that even though we often don’t have control of arthritis,
there are some things we can do to feel a bit of control over our lives with
it. That may sound like an oversimplification, but I know that I have zero
control over my disease, except taking my medication how it’s prescribed,
asking my healthcare team questions, and being smart about how I approach my
life with arthritis (e.g., when I need a nap, I take it, and when I travel, I
figure out how my meds are getting there with me). That’s what I mean about
control.

What are the important things CAPA learned
through developing the Charter?

The Canadian arthritis
stakeholder landscape has a lot of players – patient organizations, a charity
that represents people with arthritis, physician and healthcare provider
organizations, and an umbrella group, and yes, pharma is a part of that group,
too. It was important to get buy-in from all of these organizations. We were
also able to leverage these organizations’ outreach capabilities, and even
people like you who generously tweeted about our survey to gain feedback and
input about our Charter’s first draft.

There is a strong arthritis
community in Canada, and we were wonderfully reminded of this each time we
asked for help for support of any kind. Without our stakeholders’ support, we
would not have been able to achieve the creation of this Charter.

Was there a particular moment that stood out or
was meaningful for you personally?

I was project manager
on the Charter since we started on it back in January. At times this felt like
‘the project that would never end,’ but I’m just so pleased with what we’ve
been able to achieve with really minimal resources. I think it was the day when
I was stuffing envelopes, poster tubes, and sticking address labels on things
that I felt what we’ve actually achieved. I hope it’s in my rheumatologist’s
office, because if it’s not, he will be asked about it! We’ve developed
something that is important, useful, and has input and support from the
community. It’s still not going to end, either, because we’d like to see the
Charter in places like pharmacies and physio/occupational therapy offices. So I
see that as phase 2.

Please tell The Seated View readers about the
upcoming Arthritis Alliance of Canada conference in Toronto.

The Arthritis Alliance
of Canada is the ‘umbrella’ organization for all arthritis organizations in
Canada, raising awareness about arthritis and its burden. It’s a pro-active
organization that brings groups together to share best practices across the
country. It represents a united front for arthritis, especially when it comes
to talking to government and helping policy-makers and decision-makers
understand the burden of arthritis on Canadians.

The 2nd
annual conference is held in Toronto October 30-November 1, 2014 and it’s a free
event. This year, it’s held in conjunction with the Gairdner Awards. For non-science
people, these awards can be seen as a prelude to Nobel prizes - many Gairdner
winners have gone on to receive Nobel prize recognition for their work. This
year’s winners were instrumental in developing the first biologics used to
treat people with inflammatory arthritis. They’ll speak at the Alliance
conference. You can find more information on the conference
here (PDF) and you can
register on the Arthritis Alliance website. The audience will include researchers,
patients, clinicians, pharma, and all stakeholders. Hopefully some of you will
join us!

Thanks for taking the time to tell everyone about the Charter, Dawn. It's a wonderful thing. I'll be at the conference at least one day - looking forward to it!